If not now, when? Applying a palliative approach in long-term care
Earlier this month, the federal government committed to a $1-billion investment into long-term care homes across Canada over two years as part of its economic update.
The announcement and the investment are welcome responses to the devastating loss of life experienced in care homes from the COVID-19 pandemic over the last nine months. This financial commitment is also linked to significant public pressure placed on the government and fears of what the next wave or waves of COVID-19 will bring.
The investment, $500 million a year to be distributed on a per capita basis to provinces and territories, is targeted toward improving ventilation, carrying out infection-prevention and “control-readiness” assessments, hiring more staff and increasing the wages of existing employees.
While the investment is welcome, and greatly needed, there is an omission in the list of deliverables, one we believe would greatly enhance the quality of long-term care services across Canada – committing to, or deepening the commitment to, a palliative approach to care in long-term homes.
The pandemic’s impact on long-term care has been unprecedented and has exposed the growing trend over the last several years towards increased numbers of residents dying in long-term care.
Many Canadians who enter long-term care today have higher needs and acuity than in past years; their care is more complex and their stay often shorter. When it is apparent that end-of-life is near, decisions are often made on whether to transfer residents to hospital. Unless these patients have acute, treatable conditions and it would enhance their quality of life, transferring residents can be dangerous as acute care is not designed to support frail residents. Not to mention how traumatic moving locations can be for residents and their families.
Frequently, the best option is to have the resident remain in long-term care – however, the challenge is that the long-term care home is often not set up to provide a palliative approach. Longstanding gaps in service delivery due to chronic shortages in funding and staff have now become evident. Though running themselves ragged, the current workforce remains committed to providing high quality care. And yet, at the end of their shifts, many go home wishing they could have done more.
If there is any silver lining in all of this, it is that we must see the present challenges and gaps as opportunities to overhaul the system in meaningful ways, integrating palliative approaches to care that take into account what individuals need at the time, what’s most important to them, and whether they can benefit from a palliative approach that will aim to address their physical needs – in terms of pain and symptom management – as well as their psychological, spiritual, social and emotional needs. Focusing on all of these elements promotes dignity, respect and quality of life.
If the federal government is looking for a model to follow, it can start with a quality improvement project launched in British Columbia in pre-COVID times.
While there are variations of this model within many provinces, the B.C. project showed that frontline staff including healthcare aides, nurses and other members of the long-term care team benefitted from the introduction of tools to support early identification of the dying trajectory and resources that enhanced and encouraged conversations about death and dying, rather than avoiding them.
Weekly discussions about residents, education days, improved care planning and the introduction of nurses with palliative care expertise into the study sites supported the adoption of a palliative care approach. Uptake of the tools helped increase existing capacity in homes where end-of-life care is already part of the everyday work.
As it stands, workers are tired, frustrated and demoralized by their inability to provide the care that they know their residents and families need. We need to listen to them and act now to ensure these essential workers have access to enhanced training, and that the structural and systemic changes to support them are in place.
It is welcome news that the investment from the federal government will look to increase the size of the workforce and improve wages. Our hope is that health planners go beyond a focus on infection control and ventilation – no doubt important – to consider the structural and systemic barriers that have gotten us into trouble in the first place. If not, we can expect more of the same when the next pandemic hits, as it will.
Over the last nine months, when families were not allowed to enter care facilities and older Canadians took their last breaths from lungs under siege from COVID-19, it was the long-term care workers who were there to hold their hands through plastic gloves. They were tasked with helping people make one of the most significant transitions in life, often with inadequate training and resources.
The phrase “to die in vain” is used to describe when the ultimate sacrifice of life has been made with nothing to show for it. Let this not be the message left in history books about how we treated our older Canadians who fell victim to such unspeakable circumstances.
Let their lives and their sacrifice, as well as those of our essential workers, be our catalysts for change.